Luciana won't turn 6 for another month, but she's already endured a dozen surgeries and other procedures on her heart. Ultimately, she'll need a heart-lung transplant to ensure long-term survival.

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By Michael Randall

recordonline.com

By Michael Randall

Posted Nov. 28, 2013 at 2:00 AM

By Michael Randall
Posted Nov. 28, 2013 at 2:00 AM

» Social News

Luciana Nicolosi was 9 months old when she was diagnosed with a rare heart condition.

Its formal name is Critical Pulmonary Arterial Branch Stenosis. In plain English, that means her arteries get blocked, her blood can't get enough oxygen and then her heart has to work harder — posing the danger of heart failure and death.

Luciana won't turn 6 for another month, but she's already endured a dozen surgeries and other procedures on her heart. Ultimately, she'll need a heart-lung transplant to ensure long-term survival.

Luciana's problem originally was thought to be a heart murmur — a condition found in many young children which usually turn out to be no cause for concern. But as Thomas Nicolosi, Luciana's father, tells it, “Her pediatrician recognized very early it wasn't normal. And it was getting much worse.”

The family was referred first to Westchester Medical Center, where a balloon angioplasty procedure was tried to open her arteries better. Then eventually they were referred to Boston Children's Hospital, one of only seven hospitals in the country doing clinical research on the rare condition.

Of her surgeon, Tom Nicolosi said, “The woman is a godsend as far as I'm concerned.”

At Luciana's most recent surgery, in October, the surgeon had to cut the operation short, about 18 minutes in, when it put too much pressure on the young girl's heart. Now everyone's waiting to see what the next step might be.

“Right now we're in limbo,” said Tom Nicolosi.

Luciana's doctors have sought to wait as long as possible to do a transplant, with the hope being that once it's done, she can lead a normal life. But while, as mom Lorraine Nicolosi says, “We try to keep a little bit of a bubble around her,” the truth is, Luciana already leads a pretty normal life. She attends Temple Hill Academy in New Windsor. She copes with a peanut allergy. She enjoys time spent with her older brother and sister.

Two weeks after Luciana's last surgery, the family was thrown a financial curveball when Thomas Nicolosi was laid off from his security officer job. The family's medical benefits were discontinued as a result.

But Tom and Lorraine Nicolosi spent little time bemoaning that twist of fate during a recent interview. In fact, they talked about plans to make Luciana's Cause, which was started to raise funds to cover their daughter's medical bills, an official 501(c)(3) not-for-profit, so funds raised could also be used to help other parents in similar situations, just as people have helped them.

“Our goal is to make sure each family facing the experience we're facing are helped through their time (of need),” Tom Nicolosi said.

We've launched a page that seeks to offer information to those hoping to give to their neighbors, especially during the holiday season. Giving 845 offers contact information on local health, wellness, shelter and family care facilities, plus stories on those doing good and hoping for better.